Help for rare disorder in US

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Azaria Allen wants to go to America, but not to visit the usual children's attractions.

The Algies Bay family plans to attend a Platelet Disorder Support Association conference from July 11-13 to help improve her life.

The 4-year-old has Immune Thrombocytopenia Purapura, ITP, a rare autoimmune low blood platelet disorder which has some symptoms similar to chronic fatigue syndrome.

Family, including mum Wendy, want to meet medical specialists, and others with ITP, and learn how to help Azaria.

Azaria's blood platelets, which help stop bleeding, fluctuate and can drop to around 20,000 per millilitre of blood. The normal is between 150,000 and 400,000.

When Azaria was 2 she had many bruises on her legs, arms, spine and a black bruise on her cheek, Wendy says.

"She didn't remember getting any of them. Azaria was also tired and falling over a lot."

She had X-rays, CT scans, a bone marrow biopsy, and up to four blood tests a week, as well as emergency hospital visits.

"Azaria was diagnosed with ITP, which is not genetic and non-contagious," Wendy says.

"It is likely a virus caused her disorder."

An immune system defect sees antibodies attach to platelets because parts of the platelet look like a virus or bacteria the body is fighting.

"Azaria gets tired and fatigued and sometimes falls asleep at the dinner table with her head in her food," Wendy says.

"She has had light sensitivity and pain all over her body for more than 18 months, and when the symptoms are at their worst even stroking her hair hurts her.

"We don't know if the pain and light sensitivity is caused by ITP, so doctors are continuing to do tests to see if they can find the cause. Sometimes Azaria has a sore mouth and doesn't want to eat or drink. She also says she's too tired to eat and says eating makes her tired."

The Allens have started a support group for those with platelet disorders, and their families.

Friends and family are fundraising for the Los Angeles trip.

Visit givealittle.co.nz/cause/weloveazaria to help get the Allens to the conference. Join the ITP New Zealand group on Facebook.